GP refusing to send me to private investigations

[Wobblyheart]

I want to preface this with saying that my GP practice is really amazing compared to what I have experienced before, on time, understanding, caring, accommodating. They have ordered a significant number of investigations for me already, but not being able to find anything abnormal. So I do understand why they are doing it but I feel so incredibly frustrated.

Long story short, I have been suffering with relentless fatigue (nothing like any thing i have experienced before) for 2 years, my muscles hurt and burn on a minimal exertion and out of breath from minimal activity. I have a bloated stomach all the time, and some digestive issues. Recently I discovered a really large - maybe 10 cm or so - sausage shaped lump in my right side. GP could feel it too on the examination. Suggested it could be my ascending colon. However, my worry is that the lump is ALWAYS there, irrespective of bowel movements or anything else. After 3 FIT tests and normal bloods, GP refused to refer me for a private scan. I understand and dont want to be a burden for NHS anymore but why refuse to send me privately?

I do suffer from health anxiety and the rationing is that it will not help me. However, without knowing what this lump is, my anxiety meds (a high dose) doesnt do anything for me, without knowing i wont be able to try for another pregnancy (and I am 38 already). I understnad why having another scan might make anxiety worth but i feel like denying it to me just resorts me to a half-living in a state of tourteous uncertainty. If i did not a physical lump and this 2 year exhaustion, I would find it much easier to move one, but this is not the case here. I know that no amount of CBT, drugs etc wont be able to help me whilst I feel utterly drained of energy for no obvious reason and feeling the "swelling/lump" in my abdomen.

I hate this situation so much. Because I totally understand where the GP is coming from but it is not going to be helpful for me. I hear people and some people say this to me too: "advocate for yourself". I'd like them to try and be a young woman with health anxiety and real physical symptoms and try to advocate for themselves. I am burnt out. Scared. and so so so so tired.

Yep that would be about right price wise where I live

I'd recommend jointing something like benenden in future OP. You get up to 2,500 for initial tests and consultations and it is really easy to use and only about £15 a month.

My mum paid to see a private cardiologist. It saved her life.

Book to see someone privately - they will send results to your GP.,

As others have said, you can't book yourself in for a CT/MRI etc but you can do it in 2 steps.

1 Refer yourself to a gastro consultant
2 They will discuss your issues and refer you for tests if necessary.

You will pay for both.

The 3rd option is you pay to see a private consultant and they will refer you via the NHS for tests.

Choose a consultant who also works in the NHS.

OP says she can't afford the actual tests.

A colonoscopy is around £1K+ depending where it's done.

That link is possibly misleading, as you may still need a consultant to refer you. I can't see where it says you can self-refer for the procedure.

This was the chain of communication for me (in South West England, two years ago):

Telephone consultation with NHS GP to discuss worsening condition.
GP refers me for NHS X-ray.
GP phones to say he has the X-ray report, my condition is severe and I need surgery.
Tell GP I am considering self funded surgery at local private hospital.
GP asks whether I would like him to make the referral.
I say yes and ask for his recommendations for a surgeon. He recommends Mr A.

GP practice secretary phones a couple of days later to say that Mr A is no longer working at that hospital and would I like to suggest a different surgeon. I suggest Mr B. Secretary write letter of referral to Mr B.

Mr B's secretary phones me to book an initial consultation.
Have consultation and Mr B accesses X-ray imaging from NHS system and also reviews recent CT and MRI scans carried out for another condition but which also imaged and reported on the condition that needs surgery.

Wait for quote from hospital for price for self funded package.
Accept quote and book date for surgery.
Mr B liaises with NHS consultant about other condition which may impact on fitness for surgery. Letters CCd to me and to GP.
Have operation.

So yes, my GP did make the referral, then I booked the initial consultation and operation date.

As I have said, I could have self-referred directly to my private surgeon but there was the choice of self-referring or having the GP write a referral letter/form with the hospital phoning me to book the initial consultation.

This is my private hospital group's protocol for referrals:

https://www.circlehealthgroup.co.uk/paying-for-treatment/self-pay-step-by-step-guide

The first step is booking your private consultation. There are three ways you can do this...

You still have to arrange your own private appointment… the letter is a courtesy so the consultant knows vaguely what’s going on.
Its not like an NHS where we have to justify why you need to be seen.

The bottom line is… you dont need your GPs permission to go private.
You can have your initial consultation and see what they say.
If any tests are needed you can either pay for those privately or jope
your GP will refer on the basis of the consultants letter.
However… you can’t jump
the queue - you’ll have to wait.
Plus… it what your consultant recommends is not NICE recommended or locally commissioned… you’re back to paying privately.
The NHS will provide what you need (mostly) but not always what you want.

If you can contemplate the expense of another child you can afford to have private tests done.

If it is making you so anxious then it will be cheap at the price to find out one way or another if you are right to be concerned.

I don't think anyone is suggesting that an NHS GP would book a private appointment for you - only that an NHS GP can make a referral to a private consultant, if the consultant requires a GP referral letter.

From Circle Health Group:

"1. With a GP referral letter
Some consultants will ask for a referral letter from your GP before they can book you in for an appointment. This is normally so that they can double-check that their medical expertise meets your needs (as confirmed by your GP's recommendation)."

You can’t have a test just because you pay for it. The referrals, private or nhs are reviewed and turfed by the radiology dept if its not relevant. Pt has a colon ( that will feel like a sausage) if its full of poo is not a valid reason. Even more unethical to refer you if you have health anxiety. When the US is normal you’ll want a CT and this carries risk… it wont stop. Get another medical opinion if you want, see if that surgeon or other GP concurs.

Do some research online as to who’s good with your symptoms and self refer just at call spire or similar
if you are self funding you can do this

Sure, but why is there is a sausage lump there ALL THE TIME and only in one place? Before or after bowel movements.

I disagree. There is a physical lump. GP did NOT say - its just poop, he said there is a swelling and he would refer to a gasto specialist but routinely. I cannot.afford to wait another 4 months after feeling like third of a human for 2 years.

And even if it does fuel my anxiety further and I would want more scans, why is it GPs issue if I pay for it privately? Why GPs wouldn't tell men who collect expensive cars that it's an unnecessary obsession? But the moment it's health anxiety, there it is, a stigma.

I'd be also interested to see whether there is a lower prevalence of health anxieties in the countries with easier access to diagnostics.

That is exactly what I am doing. I am just feeling like we shouldn't be fighting and chasing all the time. It feels hard. And there is a massive power inequality. I am not blaming my GPs as they have been really great to me overall. And as I said I understand their reasoning.

But I also know I cannot even start to work on the mental aspect of this until I know what this lump is. So private here we go. I am just tired that this is taking so long ams so much effort and stress. No one is talking what impact the long waiting times makes on one's mental health. Just about that the person themselves is anxious. I think it is not quite right even though I am extremely sympathetic to the pressures health care professionals are under and really grateful to all doctors, nurses and clinicians. I just wish it was better for ALL of us, including them, and also for the stigma of health anxiety not creating prejudicies.

Yes, that's where the private insurance comes in, they authorise it and advise of consultants nearby and you can just email or call their secretary and email across the info to them. It's not a big deal.

That’s not correct, I have private medical insurance but need a GP referral each and everytime. I’ve never had any issues getting one. In fact they are generally far more willing to refer privately than NHS.

But OP isn’t asking them to book and appointment, she’s asking for a referral letter which is exactly what it’s being referred to.

If you have health anxiety and the GP declines to refer as it's not clinically indicted that is reasonable. Doing scans 'for reassurance' or to 'rule out' another rare condition you have become worried about won't help health anxiety.

I understand that, but if I would like to do a private scan why would this be a problem? Even if I will have repeated scans etc, why anyone should be bothered if this is done privately? no one refuses medical treatment for gamblers right?

Also, in my case the GP could not reassure me that there is no lump, there IS a lump and I do have worrying symptoms including night sweats, constant bloating, changes in bowel movements, unexplained fatigue. So it is not the same as being worried whilst feeling well.

When I asked them why I can feel my bowels on the right side always but never on the left side the answer was it "could" be normal. I am very grateful for the fact that they are not concerned enough but "could" in my opinion is not good enough when you have a lump. It is not like they have said to me that it is nothing to worry about, that it is totally normal etc.

Health anxiety is really tough OP, have you had any psychological treatment?

I work in this area and it is quite common for a line to be drawn where practitioners determine (usually following quite extensive tests for various conditions over time), that the likelihood is that the health anxiety is fuelling the sense that there is something wrong rather than a clinical reason, and that it is not ethical to the person to continue to offer further testing. It’s known that this generally just continues to compound the anxiety and the person generally will come back soon after with another health problem that they feel an intense need to explore. It’s also worth noting that often people with health anxiety are hypervigilant to their body and place importance and focus on lumps / other symptoms that might have always been there or that are common across lots of people. I have known people to cause lumps by constantly prodding and ‘checking’ it.

if they have been doing testing for various things over time and have come to the conclusion that further testing is not indicated then they should be strongly encouraging you to have the right support for your health anxiety. It sits under a wider anxiety umberella but health anxiety is a specific condition (which most people wouldn’t meet a diagnostic threshold for- usually people with the condition often think that there is something really wrong and repeatedly ask for investigations that are not indicated and very costly, and Dr’s have a duty of care to offer treatment or investigations only where there is enough evidence to do so and following guidelines. It’s really not a subjective choice most of the time.) You of course can go private but I suspect they would also need to have some sort of clinical indication to go ahead as they are still bound to professional standards, but maybe even having the consultation for a second opinion might be reassurance enough that your symptoms either do or do not need further scanning.

of course.. it is also your right to request a second opinion in the nhs and this has to be resourced for you.

There's loud people filleting here that have no understanding about private healthcare and how referrals are made.

Some private healthcare requires a GP referral. It depends on the provider. Some do not require a referral. NHS GPs can and do refer to private healthcare providers. They can obviously refuse to refer if get don't think it's clinically necessary/justifiable whether it's NHS or private.

I have a mix of private and NHS care. Over the years I have:

• been referred by my NHS GP for a colonoscopy/endoscopy etc to a private gastro.
• been referred to a private endo who required a GP referral
• the private endo I currently see does not require a referral.
• seen a private GP who don't generally require referrals.
• tried to obtain a private thyroid scan from one provider who would not do a scan without a referral, went to another provider who would.

Etc etc etc.

Thank you, I understand this. This is just how I feel. I cannot move into planning a pregnancy without knowing what's going on. As I mentioned before I had a large lump in my muscles after childbirth and waiting 4 months for a diagnosis (this was on 2ww pathway) whilst caring for a 2 month old was agony. Thankfully it was benign, but I don't think I have ever recovered from that wait.

I think there is evidence that longer waiting time increase health anxiety in people already prone to it; but same is true for medical over testing. I get it. I do not know what the answer is.

Also, health anxiety is anxiety when you have no or minor symptoms. I wouldnt call night sweats, reduced appetite, change of bowel movements, lump and pain in stomach and lower back, unexplained fatigue minor. So I guess this is what I am really questioning.